Physician Outreach Project

The objectives of this project are to inform community neurologists, psychiatrists and genetic counselors of the availability of specialty multidisciplinary care for HD families at Wake Forest University, University of North Carolina at Chapel Hill, and Duke University. We hope to identify areas around the state of North Carolina that may reflect geographic “pockets” of higher density patient populations. We are also interested in learning how many of the targeted professionals have had past or present experience working with HD families.

The plan of work will include:
Maintenance of a database of Neurologists, Psychiatrists, and Genetic Counselors practicing in North Carolina, which will include approximately 2,500 clinicians.

A mailing will be assembled that will include:
A personalized letter to individuals identified by the database with information about resources for patient care and opportunities for referrals

An educational brochure for waiting rooms that will inform patients and families of resources for expert care and opportunities for clinical studies.

Tri-fold brochures for patients to be distributed during office visits detailing social work support available through the NC-CCHD as well as information on available clinical sites.

Mailing completion date: September 10, 2010

The NC-CCHD Community Outreach Project - Pilot Survey

In order to best organize our work, we would like to identify every person in North Carolina affected by or involved in the care of people with Huntington’s Disease. For this reason, we have developed a survey to be posted on our website that will allow people to register with us. The survey includes demographic data, information about affected status, family communication issues and connection to social networking sites. The survey is designed as a pilot to see how people connect with us without a large outreach project, and to see if the survey makes sense to the HD community.

This project will probably take a few years to complete, and will require input from clinicians, social scientists (MPH, epidemiologists), NC-HDSA and family members. A committee of at least 5 people will need to be developed to design and carry out the project, and likely many volunteers. Grant money and other funding will be required to do it well.